Published: 19 October 2023
An Australian registry of people living with debilitating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) will be expanded to include people with Long COVID.
AusME Registry and Biobank, a collaboration between national patient advocacy organisation Emerge Australia and universities, is recruiting people with post-infection diseases to join research efforts to find a cure for complex illnesses.
Although Long COVID has only emerged in recent years, researchers have uncovered clear overlaps between it and ME/CFS. There are up to 250,000 people living with ME/CFS with forecasts that 320,000 people will develop Long COVID.
AusME is set to provide researchers with important insights into the lived experience of those with post-viral illnesses. Participants have the option of donating blood which will help discover disease causes and treatments.
The AusME Registry and Biobank hopes to lead to reliable disease markers and effective treatments for ME/CFS and Long COVID.
Historically, inconclusive findings from ME/CFS research and clinical trials have been blamed on methodological problems, small sample sizes, and selection bias towards those less affected by ME/CFS.
“We need individuals affected by Long COVID and ME/CFS, as well as healthy volunteers, to sign up for the AusME Registry to support medical research discoveries into these diseases,” Ms Wilson said.
“An online registry collating big data from the very patients affected by these diseases will transform ME/CFS and Long COVID research.”